A Trip to the VA: Rat lungworm Urological Symptoms

A Story of a Girl and her Bladder after Surviving Rat Lungworm.

A Trilogy

My first appointment with the Urology clinic once I was on my own was January 20th, 2014.

That’s 13 months and a day after I was released from the Community Living Center in the Phoenix VA Health Care System following my fight for my life against rat lungworm disease. When asked why it took so long to be seen after having my bladder and colon OBVIOUSLY not functioning correctly, I have to shrug my shoulders and say with a smirk reflecting the hopelessness of being a combat veteran in need of care, “When your health care is free you get what you pay for.”

Each time I visit the VA hospital for treatment, I must drive nearly two hours. Normally I take the shuttle from the clinic in Moab, which is how I got there this time. Sitting alone in the back seat of the small SUV, while an older gentleman drove the 80-year-old veteran in the front seat and myself along the desolate highway to Grand Junction, Colorado, I found silent tears of fear sliding down my cheeks.

31 years old…and not sure how to pee…What if they don’t have an answer?

When we arrived, I went straight to the urology clinic and checked in. I sat down in the waiting room, alone, in the corner. I felt a knot build in my throat and tears welling as I sat, waiting silently to meet the woman who could potentially answer at least one of my questions.

Hopefully.

I had a moment of recognizing my acute alone-ness in this battle. I have a sister that says everyone has problems peeing at 30 and has no patience to listen, a cousin that emailed me hatefully on Facebook after reading my updates on this site to help other rat lungworm survivors, “I know you got sick. But you know what .. shut up about it. I am sick EVERY FUCKING DAY.. and no one knows..you know why??? cause i don’t want that kind of pity. I don’t want that.. oh look how great life is that i’m alive bullshit. I take my mother fucking shot and i eat.the.pain. It will never go away and i probably will need a bone marrow transplant, but whatever,“ a step-mother who had been in my life since I was six, who hasn’t called me in nearly a year after my father killed himself and refuses to ask how I’m fairing while she handles her own recovery from trauma and guilt on an island where there’s a deliberate refusal to ever mention or acknowledge the truth. This is after wordlessly sneaking me my father’s ashes stuffed in a hand cooler locked out of the house with EVERY tangible picture or letter I’d EVER sent home from Iraq or Afghanistan without an explanation.

Lastly, my soulmate had just gotten a new job, and couldn’t be there.

I smirked and rolled my eyes at the absurdness of life.

I realized in that moment how much it would truly mean to me to have some answers. I sat, smiling silently through involuntary tears that wouldn’t stop.

I hoped.

Alone and a bit lost, but not quite lonely.

She came in, introduced herself, sat down, and said what I was hoping she’d say, “I read some of your file…” I did a little stationery dance and audibly cheered (normally NOBODY at the VA reads my file before they see me, so my first visit to any specialty clinic is nearly always a waste of time spent mostly with me explaining what happened with Rat Lungworm and the listener sitting befuddled, mouth agape).

After I finished celebrating her diligence, the urologist continued, “What urological symptoms are you experiencing?”

I laughed because I was going to get to explain this for the first time directly to a urologist after waiting over six months for an appointment, and I didn’t know where to begin.

I picked a place and let loose:

I have had to learn my body again piece by piece, signal by signal, but my bladder…confuses me. I get a signal that I have to urinate, not by the genuine feeling in the bladder that I remember as a “normal” girl, but by as a nearly unbearable pressure and gnarly spasms that shoot from my feet to my knees. These spasms make me cry out in pain, contorting my face in all sorts of ways. Urination is a cognitive process for me now. There is nothing involuntary about it. There’s first the urge, a quick trip to the bathroom…then…a spasm. Not a bladder spasm that allows me to pee, but a spasm that takes the urine and hides it back in my body. I have to then focus on completely relaxing all internal parts of my abdomen until I begin to feel the urine approaching again. As it gets close to the outside world, I have to push…HARD. Like a constipated 80-year-old man who ate a 20 OZ rib eye smothered in peanut butter for breakfast. Sometimes that works, and sometimes it spasms back inside again…Oh, and the whole process is absolutely painful. The urine feels like tiny droplets of razor edged, fire. I whimper, wine, and hold myself tightly while the process is underway. Most of the times I keep my eyes closed and hands clasped desperately. I’m out of breath by the time the process is finished… AND.THIS.HAPPENS.EVERY.SINGLE.TIME.I.PEE.”

After a moment of awkward silence, the doctor agreed that testing would be in order. That means more phone calls and appointment, but no immediate answers.

I left the office feeling just as confused, but much more hopeful for some answers…next time….

Stay tuned to find out if there are solutions, permanent damage, or what!And remember….tomorrow’s not guaranteed. Appreciate even your involuntary functions in life!

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About Hurricane Rita

An 8 1/2 year wounded OIF/OEF U.S. Army veteran, who grew tired of the system, sold her things, and moved into the back of her Rav4 after becoming a civilian in 2010. Then drove to Alaska and became a river guide on the largest bald eagle preserve in the world while healing in a cabin outside of town without electricity and plumbing. A runner, dance instructor, dance fitness instructor, and Couchsurfing traveler, she was chosen to participate in the action packed adventure, 72 Hours, on TNT. It aired on July 25, 2013 at 10:00PM. She went on the show to get her brother a wheel chair. Upon her return to the states from Fiji she found out she had contracted rat lungworm disease from eating a raw slug while filming the show. Ironically, having gone on the adventure to get a wheel chair for her brother, not only did her team lose in an upsetting manner (A teammate deliberately sabotaged the win), but then she found herself in a wheel chair herself. Paralyzed from the waste down, bladder and colon shut down, nerve damage over half of her body...She survived a great deal, but consuming a raw slug was what nearly killed her. A miraculous story of inspiration, recovery, and acceptance, she's getting better day by day, all the while with a positive attitude that proves contagious. Read on, Storm Watchers!

7 Responses to A Trip to the VA: Rat lungworm Urological Symptoms

Everyone undergoes their own struggles in their own path. The overwhelming majority of those are invisible to me, as people rarely share them. I can never truly understand what you’re going through, but I can appreciate your courage in being transparent and vulnerable. Well done, and good luck peeing 🙂

🙂 Thanks, Joe! People do struggle. It’s a weird thing that not many like to admit it…study it… or simply look at it objectively. That’s what this entire site is about….looking at things realistically, sharing, being honest, loving, and laughing. I think that about sums it up. 😀 Miss you! We should reunite somewhere in the west…Moab, perhaps?

I hate to hear how our former military are treated,you all should be treated with golden hands and top priority.I wish you could all join together in Washington, and let them know how you are treated or you should write to the president.You are such a good writer,maybe it would help.Can’t hurt to try it.

I am so sorry to hear how your family is responding to you.You are such an amazing human being.It sounds like they keep everything in and that is not at all a good thing to do.Keep on telling us your story, I love your updates.

There are pictures that I want to send you from the day we met you on the rafting trip in Alaska.I tried to send them to you but don’t know if they got to you with the email address I tried.What would be the best way for you to get them? Hang in there!!!!

Funny thing, Diane. One of the reasons I had such a hard time in the hospital was because I was finally admitted (after 6 trips to the ER over 3 weeks) on the 7th of November, meaning that the results of my spinal tap that were sent to CDC were put on the back burner because it was Veteran’s Day weekend…So no diagnosis…nada for the vet dying on Vet weekend. :/ You can email me pictures at tomorrowsnotguaranteed@gmail.com or dancemoab@gmail.com

My family has their own traumas. My cousin…well, there’s no excuse for her, and I don’t pretend for there to be. She mostly just disgusts me. I have many excerpts of nasty emails she’s sent me about my choices to take my life into my own hands…including claiming that I have no backbone for leaving the army…. but the rest of the folks simply have their own issues that they need to handle…I look too much like my father to be part of the healing process. I’ve learned that 1st hand already. :/

yip, it’s not easy that’s for sure. Family,…..now there’s a bunch of people that causes more grief than good. I thought just my family was a bunch of jerks,…but is seems like everyone I know has family members with a Jerk Factor of 10. Never understood it. The older I get the less contact I have with them. Not sure if it was like that with previous generations, but it’s like that these days. I just don’t share my personal “shtuff” with family no-more. The less they know about me,..the happier they are and so am I. You are not alone in having “weird” family members, it’s nothing that you did wrong. It’s just how it is. Don’t know why.

I honestly stopped calling home a long time ago because of that. I used to call 3-4 times a week, just to chat…but the complaints about each other, my father, work, etc always reigned over the positive. The trash talking about my other family members, the bonding through trauma…not my style anymore. I want to bond through enlightenment and positivity, not hate and nastiness.

It’s interesting. The “closest” people are the ones not reading anything I’m writing, and so by default, I’m not sharing personal “shtuff” with family anymore.